Being labelled ‘autistic’ aged 14 saved my life | UK | News

In the hallowed halls of Westminster, a senior Conservative MP is listening intently to a young man as he rebuts his argument that society is too keen to label children as having special educational needs.

Tobias Lambe, 20, passionately explains to the politician that being diagnosed as autistic at 14 saved his life. “As a teenager, I was in and out of hospital in mental crisis because no one would listen to me or my family when we said I might be autistic,” he explains.

“I was labelled as ‘odd’, or ‘quirky’, or ‘hyperactive’ or ‘out of touch’ by classmates and adults. But I wasn’t, I was autistic. Having the right label, in the form of an autism diagnosis, has enabled me to access support and to get on with my life.

“From a teenager who was costing the NHS thousands of pounds in medical interventions, I am now studying to be a doctor.”

The MP nods, absorbing the incredible story he has just heard. It’s unlikely he will forget Tobias.

And that was the exact purpose of young disabled and neurodivergent people co-hosting a drop-in with politicians in Parliament earlier this month.

It gave lawmakers the chance to talk to those most affected by the lack of provision in children’s education, health and social care that is acknowledged by ministers to have reached crisis point.

The event was arranged by the Disabled Children’s Partnership, an umbrella group of 120 charities and organisations, plus its founder member charity, Kids, to launch an information toolkit for MPs and staff explaining the complex and often misunderstood topics around Special Educational Needs and Disabilities provision.

It was co-hosted by Lee Barron, MP for Corby and East Northants, a new Labour MP who has already discovered just how contentious an issue it is.

Less than six months into his term, he has been contacted frequently by local parents at their wits’ end and driven to protesting outside their local council’s offices. In March, Care Quality Commission and Ofsted inspectors found “widespread and systemic failings” in North Northamptonshire’s services for children with special needs.

Barron’s constituents are not alone. The same education and care watchdogs have found one in four areas visited under new SEND inspection rules so far have the same failures, “leading to significant concerns about the experiences and outcomes” of children with extra needs.

All too aware of that level of chaos in the system, politicians including Southampton MP Darren Paffey and Scarborough and Whitby MP Alison Hume, and their staff from 54 constituencies, chatted to Tobias and four other very different young people. All five had been let down by the authorities meant to help them.

Carly Blake has cerebral palsy, visual impairment and learning disabilities. She was suspicious at first of talking to Isle of Wight West MP Richard Quigley. She explains: “I’m from Portsmouth and when he saw I was wearing a Pompey FC top he told me he supported Sheffield Wednesday. I had to get over that and talk to him anyway.”

Carly, 28, told MPs her special needs school had left her in tears when they said she couldn’t do work experience in a shop because it would be “too much for her”.

“They arranged for me to work in the school library instead, not even leave the building,” she continues. “I was so upset, I told them, ‘I’m better than that.’

“When I later applied for a voluntary job in a charity shop, the manager said, ‘I’ll decide if it’s too much.’ I’m still working there 13 years later.”

Carly was also keen to talk about travel training for young disabled people as part of the curriculum. “I was never taught how to get a bus or to read a timetable so now I have to depend on taxis if I’m on my own, it means you can’t be independent,” she says. “People should see what we’re capable of, not our disabilities.”

Mr Quigley said: “Events like this are a great way not only for MPs to meet with disabled youngsters, but to hear their voices and what matters to them. In Carly’s case, it was Pompey football club and, as a Wednesday fan, we were able to share our pain.”

MP after MP spoke of their experience knocking on constituency doors during the election and frequently being hit with questions about SEND from desperate families searching for support.

Yet the subject was barely mentioned in the manifestos of the two main parties and only once in the televised leader debates.

However, the new intake of MPs is quickly realising that help for disabled children is one of the top three most pressing concerns in their constituencies and often the most time-consuming to resolve, too, as revealed in a recent DCP survey.

International Day of Persons with Disabilities took place earlier this week and the Daily Express is supporting the Represent The 24% campaign, reflecting the fact that disabled people make up nearly a quarter of the UK population. Secretary of State for Education, Bridget Phillipson, has promised to make mainstream schools more inclusive, but MPs are pressing for detail.

Chancellor Rachel Reeves gave £1billion to local authorities to write off debts so that they could focus on SEND, but how that money is spent is of concern to politicians.

And yesterday the Government announced £740million of funding to increase the number of places for SEND pupils in mainstream schools in England.

The money will be spent on adapting mainstream classrooms for accessible students and creating specialist facilities. But campaigners say the numbers pledged are a drop in the ocean compared with the scale of the crisis.

Stephen Kingdom, campaign manager for the DCP, says: “As we have become better at diagnosing young people who need extra help and scientific advances have enabled severely disabled children to live longer and access school, the need for support in schools and at home has risen.

“Match this with stretched council and health budgets and you end up with a crisis for families, who are under enormous stress.

“Thousands of children are without school places, or unable to attend schools that can’t meet their needs or don’t have the equipment or therapy support they need to thrive.

“Parents are unable to work if their children are at home, relationships break up and siblings are impacted.”

He adds: “The make-up of the new Parliament means that the conversations we have about disabled children have a different tone. For the first time, many of the new MPs across the political spectrum are parent carers.

“We are hopeful that this means there are more people willing to fight for disabled children across the country.”

In order to help politicians understand the complexities around SEND, and to coincide with the new Parliament, which includes 335 new MPs, the DCP has produced a SEND Toolkit for policy makers, outlining the key points including the term’s definition.

To meet criteria, a child has to have a learning difficulty or disability that requires special provision or have a disability which prevents them accessing mainstream education. A learning disability means they find it significantly harder to learn than their age-group peers.

The SEND system applies to all young people with those defined needs as long as they are in education or training, with support coming from education, health and social care systems working with local departments.

If their needs cannot be met, their parents or school can ask for an Assessment for an Education, Health and Care Plan. Some 576,000 children and young people accessed one last year.

Jen Craft, MP for Thurrock, who showed youngsters around Parliament, said: “As a SEND parent, I know how important it is that MPs know where the law stands on supporting disabled children. To have the opportunity to hear from young people themselves who have such a variety of needs is crucial.”